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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Atypical HELLP syndrome ... Anyone out there?

12 replies

BeckiFarrell19 · 29/09/2019 17:56

Hi everyone.
My name is Becki.
On the 18th September I delivered my beautiful son via emergency c section.
He died 4 days later after fighting.

I'm still trying to process what happened to us with the syndrome.
Nothing about it was normal.
My poor baby got sick around week 21. The amniotic fluid was low and his growth had slowed down. None of which were out of the normal range or cause for concern.
I was a little bloated but that was all.

Me and my husband went on our baby moon to Naples where we honeymooned. I was so exhausted but travelling whilst Pregnant I figured this was normal.
About 2 days in I began to experience a pain I cannot describe. It would come in waves every 2-3 hours and last anywhere from 45minutes and one held me for 6 hours. We were in another country with no pain releif and a language barrier that needed something more than ordering food and coffee. I was constantly being sick and remember thinking id wet myself. That was the last of my fluid going.
My poor son was curled up in a ball holding on. Finally we went to a hospital after the pain waves were getting closer together and I was getting weaker. They immediately scanned the baby and told us it wasn't related and to go home and take paracetamol. So we did. I rode it out for another day or 2 calling the hospital back in England and told them to expect us.
We were admitted for gallstones.
The pain was still aggressive and my blood pressure was perfectly healthy and consistent. I was just exhausted and vomiting continuously. But we put it down to the pain. Morphine wouldn't budge it.
3 days later I was told my blood work was life threatening and was rushed down to a high dependency unit.
I was put on IV magnesium sulphate and given steroids for my son's lungs. I was 26 weeks and 3 days gestation.
They told us there and then our son had 0-3% chance of survival.
Every single day my levels would drop or elevate either end and I was dying. They prepped blood transfusions and researched more as they still didn't know what was killing me.
Still normal blood pressure.
Still no protein in my urine.
To look at I was just tired but sitting up and talking.
I held on. Rode it out for days when I was finally blue lighted over to a specialist unit who had a team waiting for me and for my son on NICU.
We held out for another day as once again my levels stabalised enough to consider a c section. Then they dropped and kept dropping and I was told I'd be delivering within the hour or we would lose both of us.
The c section went perfectly. And my son came out crying as loud as he could for a baby weighing 460grams.
I was still sick and recovering on a labor ward having hourly bloods and observations whilst my husband spent his hours between the 2 of us.
A day after I went to see him. He was so tiny. And off the ventilator. I had so much hope, love and pride for my tiny mighty son. I fell completely in love with this beautiful tiny person.
But he was sick and they kept telling us.
Day 3 was full of hope. He was responding to medicine and his kidney's had kicked in.
But we got called down to the NICU at 5am the next morning and we just knew.
They removed the ventilator he'd been put back on and we were told all there was left to do was cuddle him. Just be there for him .
So we did. He died in my arms.
I cannot find the research online. It's all we've done since leaving hospital a week ago and there is nothing.
None of my consultants knew what this was or had seen it presented like this before.
I just can't accept im alone in this.

Please.

Is there anyone else?

Please. Please reach out. I need to know this gets better. I need to know if happens again.

Has anyone suffered this awful syndrome and gone on to have healthy pregnancies and babies?

Thank you for reading. I hope no one shares this story but if you do then im sorry and im here.

Thank you.

OP posts:
mistermagpie · 29/09/2019 18:30

I'm so so sorry for the loss of your son, what a terrible set of circumstances surrounded his birth and it sounds absolutely terrifying and completely tragic.

I've only known one person with HELLP, and whilst she was very poorly her baby hung on and is still here now nine years later. So I'm sorry I have no advice but you have all my sympathy.

Jesskir89 · 29/09/2019 18:38

Op I can't shed any light I'm affraid but didn't want to read and run. My heart fully goes out to you and your dh. I'm so sorry you've had to go through this. I lost a baby at 16 weeks a few years ago and that was hard enough. I hope you get the answers you need and find the strength to push through this horrendously difficult time.

Sorbfsiabs · 29/09/2019 18:43

I hope you get some help, I'm sorry I don't have anything of use but thoughts and sympathies. Have you been in touch with SANDS? They have access to counselors

HeyAssbutt · 29/09/2019 18:49

Hi Becci. I'm so so sorry for what you've been through.
I was diagnosed with HELLP syndrome at 38 weeks. The pain was strange. It was sort of under my ribs and I was quite breathless. It was continuous from about 4am. I went to the hospital at 8am and was admitted and had bloods taken. Nobody could tell me what was wrong. I was given pethodine for the pain. I was measuring 25 weeks but my midwife hadn't picked this up. As it was my first I didn't think anything of it. My blood pressure was also fine.
At 10pm the doctor came and told me it was HELLP and I had to have emergency section right away. My daughter was born at 12.22am weighing 4lbs 11oz. She is now a happy and healthy 4 year old. I was in hospital for 5 days to recover.
I was then told that it is very rare but it also means that its more likely I will get it again. It can also happen at any time during pregnancy. I was fortunate as it was so close to full term.
I cant imagine what you are feeling right now but you are not alone. Please take care of yourself x

MoreProseccoNow · 29/09/2019 19:04

I'm so very sorry for your loss, OP. I can only imagine the pain you are going through.

I had PE & HELLP at 29 weeks, with no symptoms at all. Absolutely none. It was such a shock. With hindsight, I clearly had PTSD & was in shock for a while after.

My DS survived (just) & I went on to have DD at 36 weeks (no PE etc this time).

I asked to meet with my consultant after, for a debrief & to consider the implications of having another pregnancy.

Please feel free to PM me if I can help.

Take care of yourself Thanks

HairyDogsOfThigh · 29/09/2019 21:26

I'm so sorry for your loss Thanks.
I have no experience of HELLP, but didn't want to just scroll on by.

Ratbagratty · 29/09/2019 21:37

I had hello syndrome at 35 weeks, only presenting as pain and sickness after 4pm until about 4am. No markers in blood, urine or anything. They ordered a liver scan at 36.6 and I went in. I didn't make it to scan, my BP was shot high, I had grade 1 blood count and was told not to Google anything. I was going for a C-section now. They waited till midnight so baby was 37 weeks and to warm up platelet I found out later. Did have a tiny girl who is now a tiny 3 year old.

I was told I could try for another and I would be highly monitored as there are very very few stats. I was told there was roughly 3 pregnancy a yr at the hospital with hellp syndrome.

I did go on to have another baby (now 20months), pregnancy was fine and I was very highly monitored.

I would recommend give yourself time to heal and ask for a debrief before you make any decisions.

Sparkle0109 · 29/09/2019 21:55

I dont have any advice for you but I didnt want to read and run but wanted to say how sorry I am about your loss. I cant even begin to imagine how you and your family are feeling.
Take care of each other - I wish you all the best 🌺

PivotPivotPivottt · 29/09/2019 22:12

So sorry for your lossSad

I had pre eclampsia and HELLP at 37 weeks. I had no symptoms so it was a massive shock and a rushed traumatic induction, my baby wasnt breathing when she was born but thankfully made it. We were kept in for almost 2 weeks. I couldn't get my head around how ill the doctors were telling me I was as I felt fine. It was scary being told how things could have ended much worse for me and my baby and took me a long time to come to terms with it.

Even now 2.5 years on I struggle with it and often lie awake at night researching HELLP, I find it so hard to accept that I had this awful illness and how dangerous it is. I had a debrief with a midwife afterwards and was told that I would be at risk of developing it again in any future pregnancies but I would be closely monitored to ensure it is picked up as soon as possible.

It's worth asking for a debrief and asking all the questions you need answers to. I am really sorry you lost your baby boy Sad

BeckiFarrell19 · 30/09/2019 13:31

Thank you for sharing. I'm so happy to hear you went on to have a healthy pregnancy and your daughter made it.
I can relate to the panic. My blood said I shouldn't even be here. I held it out for 2 weeks and panic at every whiff of heartburn and still have minor seizures almost like flinches.
But im pleased to read about a healthy pregnancy for you.
We're due to see all sorts of specialists and consultant's for risk assessments and I know many will say it's too soon.
But if I don't hope to cling on to I have nothing.
Thank you for sharing. I just wish there was more research and answers. Its not new. And it's not something any mother should have to endure.
Hold your babies tight. Xxx

OP posts:
Confused38 · 30/09/2019 14:17

I have no experience of this but just could not read and run. So, so sorry this happened to you. Give yourself time and be kind to yourself. Xxx

Lozzie82 · 18/10/2019 18:21

Hi Becki,
Firstly I just want to say I’m so sorry for your loss.
Please message me if you need to ask any questions.
I developed Hellp syndrome with my son who is now 3 - I went on to have a second baby,a little girl the pregnancy was full term & I did not develop hellp syndrome.
There is hope
I’m here if you need me.
Sending you so much love xxx

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